Stepping Up to Reality

right along with complete and total uncertainty...

I feel as though I'm stepping off the charts into unknown waters. And, reflection upon that remark tells me this journey is going to run a whole range of emotions.

The reason is due to a "light bulb moment" I had several days ago. It will take some background information to bring any who care to read this to that moment, so please bear with me.

Part One begins like this:

A news story came out recently about a medical study in which it seems to be leaning toward the idea that more autism occurs in children whose mothers are over the age of 40 when they have their first child.

My grandson, Luke, has been thought by some of his teachers that perhaps he may have Aspergers Syndrome, which is a very mild form of autism - children with AS are typically extremely intelligent, but lack some abilities, mainly socially and emotionally, that non-AS children have. Luke, is, however, such a mild blip on the AS radar that his parents have not been pushed for getting him tested.

Why is this important to the story? Because I made the comment to my spouse that Lyn was well below the age of 40 when she had Luke - if he does have AS, that is - so I was questioning in my own mind once again how studies can be skewed to reach conclusions.

R's response was immediate and vehemet. "Luke does NOT have Aspergers. After all *I* do not have it and everyone says that he and I act totally alike!"

The light bulb clicked on in my head. Oh Gods.

I realized that when the kids told us about AS, I did not familiarize myself about it, just immediately rejected any possibility that MY grandson could have such a condition. This is unusual for me - I generally make an immediate foray into any material I can lay hands on to see what the brief check will yield - further study occurs based upon the initial findings.

But, what hit me hard was the anger and immediacy of R's response to a questioning statement that had wandered through my brain and out my mouth in a very general sort of way.

I realized that if Luke does, indeed, have a form of autism, it's vital for him to have it checked out, rejected or accepted in whatever case may be. Why? Because he's going to grow up, go through teenage years, adulthood, and grow to be a fine adult regardless of what any diagnosis might be.

Luke's parents are fantastic in dealing with their children. They make me proud. They work through the intricasies of parenthood with humor, grace and style. I can't blame them for not wanting to put a "label" on Luke that could have consequences for him in regard to relationships or employment. So, instead of sitting down with them and having a chat to convince them to get him tested, I decided to do what I should have done originally. I should do my own brand of research.

And I decided not to start with childhood. I wanted to see what was out there for a person with AS as an adult.

What I found has had me reeling in a maelstrom of emotion. And, that leads me to yet another part of this story.

You see, where Part One actually begins with Luke, there is a predecessor - call it a Part One, circa "somewhere over the last 37 years".

That's how long R and I have been married. You've seen me, in this very blog, gripe and complain about the inadequacies of my life with Himself. It's been my safety valve. Without it, without my friends and internet family, I really think I would have lost my mind.

I have spend almost all these years thinking that I'm the most worthless piece of shit anyone could ever have had for a wife. I have hated myself, I have done everything I can think of to change myself to be a better wife, a better lover, a better whatever I needed to be. I've tried to be an interesting person, I've tried to stay well-read, current and up-to-date. I've strived for perfection and found it lacking. I've looked at the person I was prior to marriage and I've wondered where she went, what was lacking in me that the man I'd chosen to spend my life with, to have children with could not give me time, attention, love and consideration.

And, now I'm afraid I know.

Everything...and I mean EVERYTHING I have read in the past days indicates to me that my spouse has Aspergers Syndrome.

The sad thing about this is, unlike many other potential medical problems, reaching out to the person who needs this diagnosis is difficult. There are many things which will immediately be rejected, including the person who imparts the information. Yet, it's vital for the AS person to know this, in my opinion, because if they want to interact within the world and not become a hermit, they need to know that they are not being pushed away, nor being rejected by any person who cares enough about them to be open and honest and willing to work together for a solution.

As my son said when I discussed this with him, "When you look at the list of symptoms, Dad's name is right at the top, isn't it?" Even as I laughed, I had to agree.

That Himself is an intelligent man, there is absolutely NO question. He also works hard, can keep detailed information in his head on certain things, almost always where math is concerned. Not algebra or geometry, but basic math - things like prices, on items at different grocery stores. He doesn't lose those numbers, in fact, he can't understand why I can't remember things like that. Drives him crazy that I can ask him a dozen times what the price of Oreos might be at the grocery and at WalMart. (Yes, there are some important things one should remember about the price of Oreos!)

But, sadly for anyone who finds themself in a relationship with a person with AS, there are more things at stake. I want to talk about those here with honest commentary about how those things have affected me, and ultimately us.

If you don't know what Asperger's Syndrome is, the next three paragraphs will give you a synopsis.

Impaired social reactions are a key component of Asperger's syndrome. People who suffer from this condition find it difficult to develop meaningful relationships with their peers. They struggle to understand the subtleties of communicating through eye contact, body language, or facial expressions and seldom show affection towards others. They are often accused of being disrespectful and rude, since they find they can’t comprehend expectations of appropriate social behavior and are often unable to determine the feelings of those around them. People suffering from Asperger's syndrome can be said to lack both social and emotional reciprocity.

Although Asperger's syndrome is related to autism, people who suffer from this condition do not have other developmental delays. They have normal to above average intelligence and fail to meet the diagnostic criteria for any other pervasive developmental disorder. In fact, people with Asperger's syndrome often show intense focus, highly logical thinking, and exceptional abilities in math or science.

There is no cure for Asperger's syndrome, but cognitive behavioral therapy, specialized speech therapy and counseling can help alleviate many of the condition’s more troubling symptoms. If they learn to develop the appropriate coping mechanisms, people with Asperger's syndrome are quite capable of getting married, having children, becoming gainfully employed, and leading independent lives.

A person who has Aspergers will probably have many of these traits. I'm going to comment in italics how some of these things have affected me or our family.

* Have a very hard time relating to others. It doesn't mean that they avoid social contact. But they lack instincts and skills to help them express their thoughts and feelings and notice others’ feelings.

This is quite true. Himself can be very very social when he wants to be. But, it must be at his discretion and choice. If he chooses not to participate and is forced into something he doesn't like, he will make everyone around him uncomfortable and miserable. It doesn't matter how much a social gathering might mean to family members, be it spouse or grandkids, if the desire to participate isn't there, there is nothing in his understanding to realize the hurt it causes.

* Like fixed routines. Change is hard for them.

A few weeks ago I managed to get him to try another brand of work shoes. He was determined to continue to wear Nike running shoes to work in because that's what he was accustomed to, even though he would readily admit that they bothered his feet. However, the concept of change was so very painful to him it took everything he had to try something new and accept it. Since he's done so, now you'd never know he ever wore Nike's. It's almost like they never existed for him.

* May not recognize verbal and nonverbal cues or understand social norms. For example, they may stare at others, not make eye contact, or not know what personal space means.

While the eye contact thing primarily is noticed in young children, and has been eliminated for the most part as a coping mechanism in adults with AS, there are many times when he is far more comfortable carrying on a conversation looking straight ahead, or at least not at me or others. But, that does vary situation to situation, I'm glad to say.

* May have speech that’s flat and hard to understand because it lacks tone, pitch, and accent. Or they may have a formal style of speaking that’s advanced for their age.

This may be true for children. I've never noticed this in Luke,and of course, I didn't know Himself as a child.

* May lack coordination; have unusual facial expressions, body postures, and gestures; or be somewhat clumsy.

This fits. Himself constantly drops things at home. He can't eat without spilling food down his front. It's a constant source of anger at himself for being clumsy and klutzy.

* May have poor handwriting or have trouble with other motor skills, such as riding a bike.

Adulthood has compensations. While he doesn't go out of his way to try new things, he can do all the basics, like throw a baseball or football, ride a bike, etc., but if he has to handle too many tasks at once, he becomes uncoordinated and clumsy, thus leading to the anger with himself for being so.

* May have only one or a few interests, or they may focus intensely on a few things. For instance, they may show an unusual interest in snakes or star names or may draw very detailed pictures.

Can you say sports and political shows? General TV watching? Constant need to information, as long as it can be gotten without social interaction?

* May be bothered by loud noises, lights, or strong tastes or textures.

Very true. He even gets angry with me if I eat potato chips. It's too loud. And, if I'm drinking bottled water and I suck the plastic in such a way that it makes noise and collapses till I take my mouth off? I'm gonna really get yelled at!

While I realize that what I've written about here is only a drop in the bucket, there is also the lack of empathy; the biggest example I can give is his refusal to hug me when my mother died. The most recent example is him leaving me laying in the snow while he went to put on shoes. Both of those things would be typical - the non-understanding of the need for a hug, and also the need to put on shoes because conditioning has made his brain wired in such a way that everyone knows that you put on shoes when you go outside. To step outside even when there is a great need is just not permissible.

There ends the saga - for now. I will be adding more to it as time goes by. I hope for more understanding as I read and learn. I'll be sure to pass information along for anyone who might have need of it in their lives, too.

Thanks for reading!

Kate